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THE AUTISM EPIDEMIC - Who should you believe?

F Edward Yazbak MD

During the last year, agenda-driven politicians introduced laws, rules and regulations that went against the wishes of parents in many states. Suddenly, parents who had always been free to make decisions concerning their infants and young children’s faith, health, diet, activities and everything else, lost their right to be concerned and selective when it came to the many mandated and ever-increasing pediatric vaccinations.

A few pediatricians, now immune from vaccine-related liability and litigation suddenly started getting cranky and disagreeable with parents who dared question them about the need, timing or safety of certain pediatric vaccines. Some pediatricians put threatening notices in their waiting rooms or on Facebook, some requested parents to sign affidavits and some simply discharged from their practice those parents they deemed too time- consuming. All those pediatricians, presumably Fellows of the American Academy of Pediatrics (AAP) seemed to ignore the Academy’s responsible advice: “Although pediatricians have the option of terminating the physician-patient relationship, they cannot do so without giving sufficient advance notice to the patient or custodial parent or legal guardian to permit another health care professional to be secured. Such decisions should be unusual and generally made only after attempts have been made to work with the family. Families with doubts about immunization should still have access to good medical care, and maintaining the relationship in the face of disagreement conveys respect and at the same time allows the child access to medical care. Furthermore, a continuing relationship allows additional opportunity to discuss the issue of immunization over time." http://pediatrics.aappublications.org/content/115/5/1428.full

*****

For personal reasons, I became interested in everything related to Autism in 1993.

Since then, I noticed that gradually, my busy colleagues who obtained their sporadic autism information solely from medical journals, were having different ideas and reaching different conclusions that I thought were flawed. I have no doubt that some of them similarly thought that I was misguided.

Although prevalence and incidence of Autism/ASD should have been easy to agree upon, it is clearly evident that this did not happen. For decades, parents thought that we had an autism epidemic while psychologists, psychiatrists and the CDC disagreed blaming the tsunami of cases on criteria used, diagnostic substitution, flawed study designs and other mumbo jumbo.

Having reviewed medical publications and reports on autism for years, it was suddenly very clear to me that History Professors research, prepare and write better reviews than certain medical authors, particularly those with hidden agendas.

Readers also differ. Busy pediatricians burdened by ever-increasing new duties, rules and regulations have only limited time to flip through a few Medical Journal reports that often contain a whole lot of confusing statistics with sometimes limited but often biased information. In general the more important the subject, the more likely it is to be stated in some unusual circuitous fashion.

In general, physicians tend to trust the accuracy of what they read in reputable medical journals because they have always been assured that anything published has been carefully examined and peer-reviewed.

Peer Review is indeed the “Quality Control” of a medical publication. A careful peer reviewer, most often an experienced practitioner from the same field, must scrutinize the proposed information for completeness, relevance, accuracy and overall fitness for publication. One of the editors will usually then examine the manuscript and the reviews before deciding to reject, request revisions or accept and publish any manuscript.

All that usually takes time.

*****

After reading Professor Rose’s paper, I decided to look at a few medical publications on the subject.

The article, published in the prestigious “Archives of Diseases of Children” in August 2003 had been provided to physicians by the BMJ Group. Drs. Lingam, Simmons, Stowe and Taylor were at the time affiliated with the Royal Free and University College Medical School, Royal Free Campus, University College London and Drs. Miller and Andrews were employed by the Public Health Laboratory Service. All inquiries related to the publication were directed to Dr. Brent Taylor, the most fervent critic of Dr. Andrew Wakefield.

The research appeared to have been primarily designed to pan Dr. Wakefield’s research by proving that in the United Kingdom and starting in 1988 when it was introduced, MMR vaccination never caused an increase in regressive autism and associated gastro-intestinal findings. The authors convinced themselves and apparently the Journal Editor that 567 children with ASD born from 1979 to 1998 in five districts in North East London (fewer than 30 births a year) constituted “a large population study”.

According to the authors: “The prevalence of autism, which was apparently rising from 1979 to 1992 reached a plateau from 1992 to 1996 at a rate of some 2.6 per 1000 live births. This leveling off, together with the reducing age at diagnosis, suggests that the earlier recorded rise in prevalence was not a real increase but was likely due to factors such as increased recognition, a greater willingness on the part of educationalists and families to accept the diagnostic label, and better recording systems”

Under “Discussion”, the authors further explained, for the benefit of tired pediatricians rubbing their eyes in disbelief: “We have shown a leveling off since the early 1990s in the previously rising recorded prevalence of autism. In our earlier study we showed an exponential increase in the number of reported cases by year of birth.1 The additional two and a half years data in the present study suggests that the rise has stopped and that prevalence has reached a plateau. Prevalence estimates for combined childhood and atypical autism from 1992 to 1996 were steady at about 45–50 cases per birth year in this study population.”

The authors must have been quite happy with themselves to proclaim that MMR vaccination had not affected the prevalence of autism in North East London in any way because, at least according to them, :

Autism/ASD cases had been increasing since 1979, nine years before the MMR vaccination

The number of Autism/ASD cases remained the same from 1992 to 1996 when many children were being vaccinated or revaccinated.

The authors even provided graphs to support their conclusions. Strangely, and for reasons they alone knew, the authors simply omitted to mention anything about the prevalence of ASD between 1996 and 2002 when the report was accepted for publication.

Interestingly, the peer-reviewers never bothered asking.

Exhausted doctors reading this article at the end of a busy day are likely to fall asleep and only remembering that U.K. Autism/ASD rates had not changed since 1992…After all, that is exactly what they had just read in the prestigious Archives of Diseases of Children.

To support their claims, Wakefield’s Royal Free opponents listed 16 references, the second of which by Eric Fombonne, a French Pediatric Psychiatrist at the MRC Child Psychiatry Unit/Institute of Psychiatry in London.

After enumerating what he thought were the reasons why there had been “supposed” increases in autism rates in the United States, Dr. Fombonne stated: “Most of the claims about the ‘epidemic’ of autism are therefore based on referral statistics from various centers. The report of the Department of Developmental Services from California has been, and still is, widely quoted as evidence for an epidemic of autism. 4 The key data of this report (Table 1 and Fig 1) need a critical examination…”

In Table 1, Fombonne listed that Type I Autism in California increased by 272.9%, PDD by 1965.8% and suspected but not yet diagnosed autism by 50.6%, a total of 2288.7% between 1987 and 1998 (11 years).

To this day, I have no idea why Dr. Fombonne thought that the above was against a suspicion of an epidemic in the making in 2001, when he published his report, particularly when the graph in Figure 1 shows a rise in autism/ASD at a 45º angle starting in 1978. [The MMR vaccine was licensed in 1973 and became widely used starting 1975.]

After mentioning “Immigration to California”, Fombonne discussed “changing diagnostic criteria” a favorite at the time before going to a favorite strategy, insulting anyone who disagrees: “The misuse of these data by some investigators is another tribute to their poor research methodology”. Next came a pompous-sounding yet clearly flawed statement: “To date, the epidemiologic evidence for a secular increase in the incidence of PDDs is both meager and negative. We simply lack good data to test hypotheses on secular changes in the incidence of autism. Because of specific methodologic limitations, the high prevalence rates reported in recent autism surveys cannot be used to derive conclusions on this issue.”

As he often does, Fombonne then back- pedaled by conceding: “Prevalence data nevertheless point to the magnitude of the problem, which had clearly been underestimated in the past” before condescendingly stating: “But there is no need to raise false alarms on putative epidemics nor to practice poor science to draw the attention to the unmet needs of large numbers of seriously impaired children and adults. More complex monitoring systems than those currently in place are needed to address the issue of secular changes in the incidence of PDDs. Maintaining case definition and identification constant, focusing on children in the upper range of school age years, controlling for changes in the population (ie, differential migration, etc. . . ) and relying on adequate sample sizes are required for future epidemiologic efforts in this area.

By now the poor reader has been thoroughly convinced that reports on autism by the California Department of Developmental Services, one of the best agencies in the United States, were neither accurate nor reliable.

Pediatricians reading the report were likely to accept it as totally accurate. After all, it was published in the leading US Pediatric Journal where it must have been thoroughly and carefully peer-reviewed. That is of course if they missed a discrete sentence: “Received for publication Nov 20, 2000; accepted Nov 20, 2000.”

*****

Most parents (and physicians) remain thoroughly convinced that if questionable information is ever published in a reputable medical journal, it will quickly be noticed by discerning readers, reported in a “Letter to the Editor” and … promptly either explained or retracted.

Sadly, that does not always happen.

After a few years in England, Dr. Fombonne went to Canada where he became: “Canada Research Chair in Child Psychiatry, Professor of Psychiatry at McGill University, and Director of the Autism Spectrum Disorders Program at the Montreal Children’s Hospital… He has a long track record of scientific/research leadership including serving as a consultant for the National Academy of Sciences, the Centers for Disease Control, the American Academy of Pediatrics, the Medical Research Council (UK), the MIND Institute (U.C. Davis) on research matters related to autism…" http://www.traininautism.com/faculty.html#fombonne

The report was accepted February 15, 2006 but for some reason, there was NO mention when it was actually first submitted for publication.

The authors of the “Montreal Study” concluded that “The prevalence of pervasive developmental disorder in Montreal was high, increasing in recent birth cohorts as found in most countries. Factors accounting for the increase include a broadening of diagnostic concepts and criteria, increased awareness and, therefore, better identification of children with pervasive developmental disorders in communities and epidemiologic surveys, and improved access to services. The findings ruled out an association between pervasive developmental disorder and either high levels of ethylmercury exposure comparable with those experienced in the United States in the 1990s or 1- or 2-dose measles-mumps-rubella vaccinations.”

I could not agree less AND neither did all my knowledgeable Canadian friends.

The strongest objection I had was over a statement by Fombonne et al that among English-speaking Montreal children born from 1987 to 1998 “pervasive developmental disorder rates significantly increased when measles-mumps-rubella vaccination uptake rates significantly decreased.”

That was totally wrong. I had carefully researched both the autism statistics AND the MMR vaccination rates in Montreal for an article I was writing at the time, and I had official and certified autism-ASD figures. I also had exact and correct MMR vaccination rates of children 24 to 30 month-old in the Montreal area: MMR vaccination rates had increased from 85.1% in 1983 (Baumgarten) to 88.8% in 1996-97 (Valiquette) to 96% in 2003-04 (Health Department Survey).

I re-read Fombonne’s article more carefully and only then did I notice that “The MMR uptake data used were available through N. Bouliane, BN, MSc of the Direction de Santé Publique de la Capitale Nationale” and that they were “routinely collected in the region of Québec among 5-year-old children attending kindergarten during 1993-2004.”

I called Ms. Bouliane and she confirmed that indeed she had provided “Monsieur Fombonne” the MMR vaccination rates for Quebec City.

I now had conclusive evidence that all study calculations and conclusions related to MMR vaccination and autism rates reported by the authors were wrong: The Autism /ASD rates were from Montreal and the MMR Uptake figures were those of Quebec City, almost 160 miles away.

A dear friend of mine from Springfield IL with whom I was sharing my findings and distress tried to calm me down: “You mean pollution in Chicago does not affect asthma rates in Peoria?” he asked.

When I settled down, I sent an E-mail to the Editor of the Journal reporting my findings and I attached all supporting evidence.

After a week, I called the Editor and he told me that he could not print my “Letter to the Editor”, myvery first ever, unless he “received permission” from Dr. Fombonne.

The Editor later forwarded to me an e-mail from Dr. Fombonne in which he wrote: "This person is known to pursue the MMR-autism agenda at all costs in order to 'demonstrate' a link he strongly believes in. The only way ahead is to encourage him to do independent research. All controlled epidemiological research thus far has concluded to the absence of such a link."

Fast Forward 10 years from the Lingam Study: It is now October 2013, less than two and a half years ago, and every country in the world is reporting huge numbers of children developing autism, every country that is, except the United Kingdom where Brent Taylor was still preaching about an “Autism Plateau”?

“Prevalence and incidence rates of autism in the UK: time trend from 2004–2010 in children aged 8 years” by B. Taylor, H. Jick and D. MacLaughlin was published in the BMJ OPEN in October 2013. http://www.ncbi.nlm.nih.gov/pubmed/24131525 Taylor was still at the Royal Free but this time, his co-authors were affiliated with The Boston Collaborative Drug Surveillance Program at Boston University School of Medicine.

As described by the authors, the study objectives were to update the UK autism prevalence and incidence studies begun in the early nineties “in response to the March 2012 report by the CDC that Autism Prevalence among 8-year-old US children was 1 in 88, a 78% increase from the 2004 estimate.”

Again using the UK General Practice Research database (GPRD), Taylor and friends reported that between 2004 and 2010, the annual prevalence rates for each year were steady at approximately 3.8/1000 boys and 0.8/1000 girls. The authors concluded: “After a fivefold increase in the annual incidence rates of autism during the 1990s in the UK, the incidence and prevalence rates in 8-year old children reached a plateau in the early 2000s and remained steady through 2010.”

Taylor then offensively added: “Whether prevalence rates have increased from the early 2000s in the USA remains uncertain.”

The publication, originally received on May 13, 2013, was returned for revision. It took the authors 106 days to submit their revised version that was reportedly accepted August 28, 2013 and ultimately published October 2013.

The Taylor comment was wrong and U.S. Autism rates had increased and indeed precipitously, between 2000 and 2013 when the CDC estimated that 1 in 68 children had been identified with autism spectrum disorder in the United States. http://www.cdc.gov/media/releases/2014/p0327-autism-spectrum-disorder.html

Two detailed critical comments discussing Taylor’s claims were published at the time.

It is absolutely true and enormously tragic that we have a World-Wide Autism Epidemic.

It is also very clear that no one really knows what causes autism.

For parents who have concerns and who need to discuss today’s terrible autism statistics with their pediatricians, the first step may very well be to print a copy of “There's No Denying the Autism Epidemic” by Professor Jonathan Rose and offer it to their pediatrician, preferably with a box of warm home made oatmeal-raisin cookies.

"I know of no safe depository of the ultimate powers of the society but the people themselves, and if we think them not enlightened enough to exercise control with a wholesome discretion, the remedy is not to take it from them, but to inform their discretion by education."

-- Thomas Jefferson, letter to William C. Jarvis, September 28, 1820

“A sacred cow will not protect the herd.”

-- Sandy Gottstein

"What's the point of vaccination if it doesn't protect you from the unvaccinated?"

-- Sandy Gottstein

"Who gets to decide what the greater good is and how many will be sacrificed to it?"